Discussion forum - Pancreatic Cancer UK

I am following/reading this board and sometimes posting with respect to my Mom's PC. We are in the UK. I am from Canada (hence post name), but here to help care for my Mom (71 years old).

We are under a research Professor in one of the best PC Centres in the UK. However, it is becoming depressing as the care in the UK is so much more delayed than that what similar patients are experiencing in North America who are getting DX, prognosis and treatment started within days if not weeks. I always thought North America was so much worse because of the cost, but at least they are not going through these tremendous delays.

My Mom's first Ultrasound when marker was found was January 2; follow up ultrasound was done February 5; CT was February 19. DX was March 7; PC in the body (5cm), inoperable due to vascular invasion, 6 - 8 months. Stent placed yesterday due to jaundice. We are yet to start any form of treatment to attempt to decrease the size of the tumor !!

We do not meet with oncologist until Tuesday next followed by updated CT next Wednesday. Results from updated CT is 1 week later and then maybe chemo (provided Mom is up to it), earliest chemo will be April 30. I asked yesterday could they not schedule the updated CT Scan while she is still in the hospital recovering from Stent and prior to meeting with oncologist, but I was told not possible. Go figure !!!

She is declining daily and the way I feel now she could very likely not be around by April 30. This is your UK Health Care !!!

We did look into private care but were told there was no advantage with respect to PC care.

On a friendlier note I have been helped through Pancreatic Cancer UK with advice and suggestions and that help has and is much appreciated.

HI Barb

Sorry to hear that you are not impressed with our healthcare. My dad had PC diagnosed in 2002 and although there was a wait for his chemo it was important that he was as strong as he could be before the chemo began.

Throughout his care, illness started in 2000 and he died in 2003 his care was absolutley top class. Following his diagnoses he was under a consultant at xx (cant remember her name :oops: ) for his whipples op and then he had his chemo at xx Hospital. he was still under the main care at L&D and had various stents and procedures there. They were all fantastic down to the HCA who helped him at his time of death.

I work for the NHS and see from both sides, the cancer waiting times are lower than ever at a time where increased screening is creating a bigger demand than ever, combine this with the ever increasing financial pressure on staff I feel its a miracle that they can deliver any kind of service, let alone a world class. You said yourself that the private sector cant compeat.

Is it possible that they are not rushing the treatment because they are treating your mum as end stage terminal? they may feel that any treatment at this stage will do more harm than good and they are preferring to manage her illness rather than cure it? Just a thought.

I hope that your mum isnt on too much pain and that they can manage her morphine effectively, my dad was on fentanyl patches and they seemed to work very well for his pain

M
xx

Hi Melanie ... no they have not been treating her as "end stage" in fact they offered her the new clinical trial out of Liverpool, however, her PC was in the body with vascular invasion before it was found. Her last CA19-9 was over 8,050. Her tumour was 5 cm at the time of dx. I think she just happens to be one of the poor people who have an aggressive cancer as her quick decline cannot be due to her mental state as it was quite positive and she was going to participate in the trial.

The care she has received this week from the MacMillan support team at the Royal Liverpool and the nursing staff is exceptional.

Where I see the delays is in the screening process and in getting to treatment from DX i.e. March 7 to at least April 30 (at the earliest), before chemo will start.

However, Mom is going downhill fast. I keep telling myself that she will be better the next day, but she is always worse.

Her pain is being managed. They just switched her off morphine to oxicontin (sp) as the morphine was relieving the pain but making her hallucinate. There was talk about patches and I thought that was being ordered but it hasn't happened yet.